Missouri Advocates For Families Affected by Autism

We are a citizens action group advocating and lobbying for families that have a child with special needs. We believe that EVERY child has a right to a FREE and APPROPRIATE EDUCATION and should NEVER BE LEFT BEHIND.

Schools Claim Wide Leeway for Restraining Special Needs Kids

ABC News filed a special report that featured the stories of special needs children who are brutally restrained in their school environments. Schools believe they need a range of tactics and leeway to deal with autistic children who “act out”.

Some of the tactics include receiving electric shocks and choke-holds, as well as securing students in restraint rooms. Kids have died from some of these incidents. A surveillance tape from the interview below shows five teachers tackling and restraining a child in what they called a “therapeutic hold”, which killed him. Doctors blamed the death on “cardiac arrest while being subdued”.

Getting a clear picture of how students with disabilities have performed under the accountability measures once mandated by No Child Left Behind is difficult because of differences among states in measuring progress, says a report from the National Center for Education Evaluation and Regional Assistance, a project of the Institute of Education Sciences.

The Inclusion of Students With Disabilities in School Accountability Systems: An Update is the latest snapshot of how schools fared under an accountability system that required them to break out the performance of students with disabilities and move them towards 100 percent academic proficiency. The report looks specifically at the four school years from 2006-07 to 2009-10; school accountability has in recent months changed dramatically with the permission of accountability waivers that have now been granted to 42 states and the District of Columbia.

Looking at student performance, the report found that in the 31 states with relevant data that the researchers were able to gather, more than half—56 percent—of the public schools were not accountable for the students with disabilities subgroup in any of the four years examined. In contrast, 23 percent of schools were consistently accountable in each of those years.

The researchers then turned their attention to schools failing to make adequate yearly progress, and for that measure were able to collect information from 39 states and the District of Columbia for 2009-10. Six percent of schools in those states that did not make AYP did so solely because of the students with disabilities subgroup. Twenty-eight percent missed the mark because of the disability subgroup and some other factor.

Once a school was identified as being in need of improvement because of the performance of students with disabilities, it tended to stay that way: 83 percent of schools in that category in 2007-08 retained that classification through 2010-11. The same held true for schools that did not face any sanctions because of the disability subgroup: 74 percent of the schools not identified for improvement in 2007-08 continued in that status through 2010-11.

So what to make of all of these statistics? In their conclusion, the authors of the report say that it is hard to tell.

Although the ESEA may be straightforward in its overall objective to improve the achievement of all students, the numerous provisions and regulations may make it challenging to determine exactly how well [students with disabilities] have been performing. Adding to these complexities is the fact that states use different tests, adopt different proficiency standards, use different methods for measuring progress, and set different minimum subgroup size for accountability purposes. These differences lead to variation across states in how [students with disabilities] are included or excluded from school accountability systems and how [students with disabilities] performance affects schools' AYP determination and school improvement status, which make cross-state comparisons difficult to interpret.

An upcoming report from IES will focus on school practices that relate to student educational outcomes.

What does "community" mean to you? For some people, this question doesn't mean much. But for the hundreds of thousands of Americans receiving Medicaid Home and Community Based Services (HCBS), the meaning of community has huge implications.

In 2010, the State of Missouri tried to use Medicaid funds that were intended to serve people with disabilities in the community to build group homes on the same property as an institution. The Centers for Medicare and Medicaid Services (CMS) rightly refused to allow Missouri to use Medicaid Home and Community Based Services (HCBS) funding for this plan, as the purpose of HCBS funding is to help people avoid institutionalization, not to fund placements that segregate people from their communities.

As a disability rights organization committed to advancing equal access and inclusion for all people with disabilities, ASAN belives strongly that anything that segregates people with disabilities from our communities is not community.

CMS has been trying to implement strong minimum standards for HCBS settings, to prevent what almost happened in Missouri from happening again. CMS has proposed regulations that would prevent HCBS dollars from going to institutions, settings that are on the grounds of an institution, settings that are segregated on the basis of disability, and settings that have the characteristics of an institution, such as lack of privacy or rules about when people can eat and sleep. This is a significant opportunity for the disability community to support a real minimum standard for the meaning of community living.

We need your help to make these standards a reality. CMS will issue a final rule by the end of 2013. Unfortunately, the institution, nursing home, and sheltered workshop industries have already written to CMS and Congress opposing any standards for how and where HCBS dollars are used. We need our community to write in to tell Congress and CMS that:

Community living cannot occur on the grounds of an institution or in settings that operate like institutions, denying people privacy and imposing rules that limit personal freedom and choice.

Community supports do not involve the use of sheltered workshops and other facility-based settings that separate and congregate people on the basis of disability.

HCBS funding should be used to support people with disabilities living in typical housing that they control, located in existing communities, alongside neighbors with and without disabilities.

HCBS funding should be used for supported employment and community involvement - not for sheltered workshops or segregated day service settings.

Tuesday, October 22, 2013

The thing about “I’m sorry” is that it’s something we’re constantly telling people we don’t want to hear. We don’t want people to pity us as parents of children with special needs. We don’t want people to be sorry that we have a child with special needs, or with challenges, or sorry for our daily struggles, or our challenge to survive the hour much less the day or a lifetime. I’ve said that before myself… don’t pity me. Don’t pity my child. I wouldn’t change a thing (except maybe there would be a couple things). But essentially, don’t be “sorry” for me / him / our family / our life.

With that, I’ve found that when I want to say, “I’m sorry”, it’s been hard to find words that say something else. Because to me, when I say “I’m sorry”, it means…

That it totally sucks that you just found out your 9 year old has the mentality of an 18 month old; that’s a hard one for people to wrap their heads around from the outside, much less as a parent. And it sucks that it also means that (realistically) while there will be so many beautiful things he will accomplish in life, so many changes he will make in the people around him that are heartwarming, touching, and yet to be known, there are still so many things he will not get to experience in life. I’m sorry means… I know you already knew it, but it sucks to have it thrown at you on a piece of paper, in black and white.

It means it sucks that on top of everything else, he has yet another ‘big deal’ diagnosis. That what he already has should be ‘enough’, but along the way has come Sensory Processing Disorder and more. And now, he has Autism too. I’m sorry means it sucks that the biggest positive outcome of this diagnosis is that he can be eligible for more services. Because it just sucks that he needs more services for another diagnosis… regardless of what it is.

It means I’m sorry… because I am overcome with the emotions that linger from every slam to my soul, for every time my own son received a new diagnosis. Each delivery no less devastating than the one before.

Many will differ with me. Will say how horrible I am for not appreciating my son, or your son, for who they are separate from any diagnosis.

Except…

My son is the most important person who has shaped my adult life, and I would have it no other way. My son has taught me about love, resilience, strength and bottomless selflessness. More than that, my son has taught me that it’s okay to be human. To feel the pain that comes with knowing the struggles he will face in his lifetime. That it’s okay to be paralyzed with fear for all the struggles I don’t yet know about, and that I can mourn those losses so long as I recognize the accomplishments when they come. But my son has also taught me that it’s okay to say “I’m sorry” out of compassion and empathy for what another mother feels when she is told many of the same things that I have been told.

So, my friend, when I say I’m sorry, please know that I’m not sorry for your special needs life. I’m not sorry that your son is who he is, because I love him too. Just know that I’m sorry for all the pain that I know you feel right now, and for how it feels when you read that on a report, for when your mind jumps ahead to all the questions you won’t yet have answers for in the years ahead. I’m sorry for the mourning you will some day do in your own time, own space and own way.

My friend, I say I’m sorry because it sucks to go through all this pain in order to find the beauty…but know there has to be beauty because he’s an awesome kid. Maybe I’m sorry will mean something different when it comes from someone who doesn’t know you, your son, the special needs life… but I hope you know what it means from me, when I say…

Monday, October 21, 2013

The Missouri House of Representatives Interim Committee on Education is holding a second round of hearings about a number of education issues facing the state. The Missouri Department of Elementary & Secondary Education encourages parents, teachers, administrators and community members to attend these hearings and make your voices heard. This is your chance to provide input on the priorities for lawmakers leading up to the 2014 legislative session.

The criminalization of mental illness — i.e., the imprisonment of individuals with a mental illness for behavior that is a symptom of their illness — is a damaging, and increasing trend. Daniel Jason is just one of tens of thousands of individuals trapped by it.

Handsome, with an athletic build but a gaze that can make him appear lost, Daniel has Asperger Syndrome. A developmental disorder (on the autism spectrum), Asperger Syndrome makes it difficult for Daniel to communicate and socialize normally with others. Individuals with Asperger Syndrome want to form strong and loving relationships with others but don’t know how to do so. Their focus on something can become obsessive.

Those with Asperger Syndrome usually have normal or above average intelligence. In December 2005, Daniel graduated early from the University of Iowa with a Bachelor’s Degree in finance. The next year he entered the university’s graduate school of business. Daniel took $2,000 of his bar mitzvah money and made $120,000 by trading options online.

Unfortunately, Daniel’s first time dating did not go well. In late December 2005 or early January 2006, after about 11 months of dating, his girlfriend, a fellow student, ended their relationship. In emails, phone calls, and text messages, Daniel alternated between begging his ex-girlfriend to get back together and threatening to reveal personal secrets if she didn’t.

Arrested on March 30, 2007 for violating a protective order that his ex-girlfriend obtained against him, Daniel has spent most of his time since then in prison, even though he hasn’t committed any violent crimes.

On May 29, 2008, after unsuccessfully representing himself at trial, Daniel was sentenced to five years in prison for violating the protective order and two years for witness tampering. On December 1, 2010, Daniel was sentenced to 27 months in prison and three years of supervised release for mailing a threatening communication to his lawyer from prison.

On November 5, 2012, Daniel was charged with one count of stalking while restricted by a protective order (he sent several email and Facebook messages to his ex-girlfriend) and two counts of extortion (in two voicemail messages left at his ex-girlfriend’s place of employment, he threatened to disclose “embarrassing information” about her). If convicted at his trial, scheduled to begin October 22, Daniel can be sentenced to up to 55 years in prison. Prosecutors offered a 10-year sentence if Daniel agreed to plead guilty but have withdrawn their offer.

Wednesday, October 16, 2013

Please, please, please do not let teachers, professionals, or any other well intended adults, prompt eye contact by physically turning the child's head and stating "look at me!" It is bad enough if you are verbally "prompting" the child to look at us, but physically turning the head is a physical assault on their security. They will have difficulty building "trust" in referencing you if you "force" eye contact. Nothing increases fear and anxiety more then someone grabbing your chin and turning your head to face them. It is intimidating, and threatening. If you want children to feel "safe, accepted, and competent" in your presence, do not "pressure" eye contact or any other interaction. Share, relate, and invite, and you will eventually gain "trust" and reciprocity! "Work with me, trust and respect me, and I will reciprocate! Force yourself on me, and you will lose me!"

1)."Your child is too smart to have an IEP" Intelligence has no bearing on disability or need. Even individuals with genius level IQs can have a disability that affects their ability to access the curriculum.

2). “This is what we do for every student.” ;(You’re probably thinking you have seen students like this, with this same diagnosis, and this is what works. While your heart may be in the right place in wanting to find something that works, your words have it all wrong. Remember, state and federal laws require the IEP be “individualized.”

When you say to parents “We do it for every student,” you revert back to a cookie cutter IEP. Quite simply, the school system’s mandate is to consider the student’s individual and unique abilities in drafting an IEP and failure to do so may result in the denial of a free, appropriate public education.

Instead, say what you really mean — “We have tried this approach before with other students who have had similar abilities and have been very successful. This is why we think it is appropriate for your child.”

3)."Your child’s emotional disturbance is interfering with her academic performance so she doesn’t qualify for an IEP." :((

There are 13 disability categories under IDEA. In order to qualify for an IEP you must meet the definition of one of the 13 categories and by reason thereof NEED special education and related services. One of the 13 disability categories is emotional disturbance and if that disability is interfering with the child’s ability to access the curriculum then by definition she has a need for an IEP.

4). “Let’s wait and talk about that some other time.”What you really mean is you have been in the meeting for hours and have more that you have to get to! Patience, my friend. Although this may be your third IEP meeting of the day, it is the one and only meeting — and certainly the most important — for the parents sitting with you.

If you find yourself replowing the same ground again and again, instead of putting it off for another day, take a soda break or, better yet, try putting the issue aside for later in the meeting and returning to it at the end of the meeting. Remember, timelines for eligibility and developing the IEP must be scrupulously followed and the failure to do so may result in a finding adverse to a school system. Consequences for violating the timelines could include compensatory education, if you’re lucky, or residential placement if you are not.

5)."This is a Charter School we don’t do IEP’s here." ;;(

All public schools are required, by law, to provide children with a disability a Free Appropriate Public Education (FAPE). Since magnet schools are public schools they are required to execute IEP’s for those children that require special education. This would also go for advanced study schools and charter schools.

6). “They may do that in Perfect School District, but we don’t do that here!”While it can be extremely frustrating to have a bygone IEP held up as the perfect IEP, take a deep breath and remind yourself that each state and each year is different. Remember that your state may not require the IEP to be a Cadillac, just a serviceable Chevrolet. Your obligation is to develop an IEP that meets the individual needs of the child, not parrot what has been done in the past.

Take the time to explain to the parents the differences in your state’s regulations and those with which they may be familiar. In addition, explain that the IEP process must be followed each year and that while you cannot just rely on past IEPs, neither can the parents. You’ll be pleasantly surprised how that simple explanation will often make a big difference in their understanding.

7). “We can’t afford that piece of equipment.” What you really mean is that you can’t afford that piece of equipment. Unfortunately, there is no escaping the bright line rule handed down by the U.S. Supreme Court that prohibits a school district from considering cost as a factor in determining whether a piece of equipment needs to be provided to a child with disabilities. Rely on the cost of an item to exclude it from the IEP and you will surely spend a few days with an independent hearing officer in a due process hearing.

Instead of asking the cost, ask whether the piece of equipment is necessary as a related service? Does it need to be used in all environments, such as the home, or is it something that stays at school? If you find you do need to list a piece of equipment on the IEP, be careful how you list it. If you list the brand name, that is what you need to supply, even if that brand is no longer manufactured or is obsolete.

. “We never provide one-on-one aides for students.”Although this may have been drilled into your head at numerous training sessions, this should not be part of your IEP meeting lexicon. Instead, ask what the parent is really asking for. If it is constant adult supervision, then say so. If it is someone to provide individual instruction to the student, then consider a change in placement or pull-out services. Throw out the negatives and start telling the parents what you do provide and how you can address the educational needs of their child.

9)."Maybe your daughter’s behavior issues are being caused by you telling her she has autism and she is emulating how she thinks someone with autism should act. I suggest not talking with her so much about her autism." ;(

Wow, I’m still amazed at this one and I’m not sure where to start. Let’s focus on the fact that they are blaming the parent for the child’s behavior in school. If the School really believes the IEP isn’t working because of the parent they are required to provide training to the parent via the related service, parent training and counseling. In my opinion, the School needs the training not the parent but let’s move on.

10)."We can’t test your child for an IEP until we have first tried Response to Intervention.'' :^[

This ridiculous statement was used by so many School Districts that on January 21, 2011 the United States Department of Education Office of Special Education and Rehabilitative Services issued a memo reminding School Districts that Response to Intervention cannot be used to delay-deny an evaluation for eligibility under IDEA.

ASK MY ADVOCATE ASSIST STUDENTS GETTING ELIGIBILITY FOR SPECIAL EDUCATION UNDER ANY QUALIFYING DISABILITY; PUTTING TOGETHER AN IEP OR 504 PLAN THAT MEETS THE STUDENTS UNIQUE NEEDS AND TO ENSURE IT IS BEING IMPLEMENTED. EXERCING RIGHT TO ACCESS A FREE APPROPRIATE EDUCATION WHEN SCHOOL DISTRICTS DOES NOT COMPLY WITH STATE AND FEDERAL LAWS.OUR SERVICES ARE FREE FOR THE SPECIAL NEEDS COMMUNITYPLEASE GIVE US A CALL DURING BUSINESS (951) 436-8534

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About Me

I am the mother of three beautiful children. Two of them have graduated from high school. One of those is in college taking remedial courses because she didn't receive the free and appropriate education that she was entitled to. I am now paying college tuition for that education.
My third child is autistic and was forced to drop out of school. He was receiving no services for his autism and was no longer progressing in his classes.
He was being destroyed emotionally, psychologically, and mentally. He was forced to take medication to just attend school and that affected his liver. He is 17 years old. He has a nonverbal IQ of 123 and the interpersonal skills of a one year old.
My taxes have paid for an $8.6 million administration center, $12 million aquatic center, $250,000 for band uniforms,and a $15 million elementary school with empty classrooms. They have not paid for my children's education. My district boasts that they spend the least amount per student of any other district in the area. But, they will hold up their facilities to those in the much richer county to the west. We also have the second highest tax levy in Jackson County.